Understanding Spina Bifida

By Mids Meinberg

Language inherently has a history; it’s derived from the society in which it was derived, but the meanings of words subtly change as they are filtered through contemporary culture. While the denotation of words (their dictionary definition) rarely changes, the connotation (the extra cultural meaning of a word) changes much more frequently. With more and more people gaining access to the telecommunication networks of the world via the internet, more people are able to put their input into the language we use and the meanings behind them.

In many cases, this means pointing out words that, while once commonplace, carry with them negative connotations, particularly with regard to marginalized groups. While I am disabled and queer, this does not give me universal access to the feelings of all marginalized people. In particular, I cannot speak in specifics about the role of inclusive language when it comes to people of color. Hopefully the general guidance provided here will provide a foundation for further learning about those specifics.

When talking about inclusive language, it is important to understand why people should not use words that are rooted in bigoted notions. The idea from Orwell’s 1984 that language restricts our thoughts is perhaps hyperbolic, but it is true that the way people speak about things reflects the way that we think about them.

For example, the word “lame” is very often used to refer to anything boring or underwhelming. However, it literally refers to a difficulty with walking deriving from injury or disability to the foot or leg. When “lame” is used in the connotative sense to mean these negative things, it can be easy to start thinking about people with disabilities affecting their movement as boring.

Now, this is not a guaranteed thing to happen. Most people can hold these two definitions separate in their minds. In fact, this process more frequently happens in reverse, where people begin to develop negative connotations to groups of people and then apply those feelings to the words used to describe those people. With disabled people, a lot of these words had their negative connotations assigned a long time ago to the point that it can be hard to know what words exactly have origins in bigotry.

In other cases, the linguistic shift has happened in recent memory. For example, the word “special” was used to refer to developmentally disabled people in an attempt to deflect from the heated connotations associated with the previous word used to describe them, the r-slur. Unfortunately, since society still at large holds extremely negative views regarding developmentally disabled people, using “special” to refer to a person rather quickly came to have the same sort of connotation as the r-slur.

Every term used to refer to queer people, including now widely accepted words like queer and gay but also less widely reclaimed slurs, has had a negative connotation at some point or another. “Gay” came to have connotations similar to “lame” while “queer” had a meaning that was built entirely upon alienating the target of the term, focusing on their role as an Other. Over time, efforts have been made to reclaim the use of these words, by separating them from their negative connotations and using them more specifically. Queer, for instance, has been reclaimed in large part to its use in academia, with queer studies taking on an important role in normalizing queer people. Gay, in contrast, has become reclaimed by informal conversations on the internet, with queer people of all kinds rallying behind it as a term they can embrace as part of their identity.

This points to the second major reason to use inclusive language: it helps the speaker to avoid looking like a bigot. We all screw up and use non-inclusive language in our informal speech; non-inclusive language is the default and we have to work to actively deprogram our minds from its usage, which is always going to be a work in progress. In formal speech or even when addressing a group of coworkers in an email, however, it’s important to be more diligent about inclusive language. If a set of prepared remarks contains non-inclusive language, it communicates to the listeners that the speaker does not care about the affected marginalized group.

There is a clear distinction here between slurs and non-inclusive language, however. Slurs should never be used, regardless of the context, though this is much easier thanks to the inherent hatred involved in a slur. As long as one does not hold active hatred towards the target of a slur, then the power of the word will be evident before it is said, allowing for its use to be prevented.

Another difference is that it is possible to use words that might be non-inclusive in contexts where their usage is in fact inclusive. For example, using the word “blind” to refer to someone being ignorant is non-inclusive, but using it to refer to someone who literally cannot see is fine. Indeed, the precise words for disabilities when used specifically to those disabilities is almost always a perfectly acceptable thing to do. Disability is not a slur and embracing being disabled as an identity helps to grant strength to disabled people, both in the general and with their specific disabilities.

There are some words, however, that are more general in their relationship to disability and thus should not be used by non-disabled people, like “crip” or “gimp.” These words still hold a larger amount of power in them, largely in how they had been weaponized against disabled people in the past. However, some disabled people have taken these words and harnessed their power, using them as a vibrant and striking form of self-identification. Even though these words have been used to hurt in the past, that history makes them a powerful symbol of unity and the changing tides of history when used by disabled people.

Ultimately, the key to understanding inclusive language is understanding that language has power, it has meaning beyond what you can find in the dictionary. By using language well and with understanding of the people who are most likely to be affected by it, you can use that power to bridge gaps rather than widen them.

In summary:

• Language subtly affects how we think about the world.
• Language is shaped by society’s perception.
• Avoid using words in a way that assigns negative connotations to marginalized groups.
• Using words literally is usually fine.
• Slurs should never be used by anyone outside of the targeted group.

Some examples:

• Don’t use blind to mean ignorant
• Don’t use deaf to mean callous
• Don’t use gay to mean bad
• Don’t use lame to mean boring
• Use non-verbal instead of dumb or mute
• Use little people to describe people with dwarfism

Mids Meinberg is a writer and game designer working out of New Jersey. They have an AA in Creative Writing from Brookdale Community College.

By Grant Stoner

Henry (left) and an employment participant. Photo provided by Easterseals Colorado

Last month, disabled individuals celebrated National Disability Employment Awareness Month (NDEAM), a time to raise awareness about the importance of workplace acceptance for disabled individuals. From freelancing to full-time work, every person deserves equal access to a welcoming and safe work environment.

For disabled people, entering the workforce can be a daunting task. Self-advocating for necessary accommodations, not exceeding income limits for those on state or federal services, and even finding jobs that offer remote opportunities are just some of the barriers that are regularly encountered. Employment Specialist Henry DeAngelis of Easterseals Colorado understands the challenges that disabled people face, especially as many seek employment for the first time. Speaking with our Easterseals blog, DeAngelis explores the work he performs at Easterseals Colorado, and even shares some success stories from some of his clients.

The Right to Work

Seeking employment is intrinsic to both nondisabled and disabled people. Working a job is necessary to make a living, provide meaningful community connections, and even help to learn new skills for future opportunities. And for DeAngelis, assisting the disabled people of Colorado is important to normalizing and embracing disabled individuals and accessibility within jobs.

“My main job is to be the liaison between the clients and the employer,” DeAngelis said. “So, making sure that that relationship is going smoothly, and mainly my job is to help work through any issues that arise. Whether this is as simple as making sure the client knows what their schedule is, and when they are expected to show up and where, whether it may be helping them request a day off or vacation time, or sometimes larger issues if a task isn’t done right.”

Photo provided by Easterseals Colorado.

Beyond these goals, DeAngelis also assists disabled individuals in adapting to new work tasks or routines as their employer changes over time. Part of this involves teaching digital literacy, an important tool in an ever-evolving digital landscape. According to DeAngelis, statistics indicate that approximately 90% of jobs in the workforce require some form of technological understanding. And for disabled individuals that either lack appropriate digital tools or the knowledge to operate them, DeAngelis and the Easterseals Colorado team provide a safe environment to learn or retrain digital skills.

“We’ve been developing [the digital literacy training program] for a few years,” he said. “A lot of what people might think of as the basics of being able to clock in and clock out. If there’s any type of training that needs to be done, like logging into websites with the account, clicking through the training, making sure everything goes smoothly.”

Digital literacy is especially important for disabled youth. As classrooms adopt digital lessons, especially in the aftermath of the COVID-19 pandemic, DeAngelis, through Job Exploration and Transition Training (JETT), teaches disabled children how to operate programs like Word, Excel, PowerPoint, and even helps clients create and understand digital resumes that they can share with prospective employers. Thankfully, Easterseals Colorado is not alone with these efforts. DeAngelis explains that there is currently a national partnership with technology company IBM to provide courses to clients that allow them to stay current with their knowledge, while simultaneously providing certificates of completion, thus bolstering resumes.

“Right now, [IBM] has a big course on AI and just understanding it,” he said. “AI hasn’t fully integrated into work yet, but a lot of companies are experimenting with it, seeing where it might be useful, finding out where it maybe isn’t. It’s something that we must keep our eyes on and see where the trends are going so that we can make sure to help our clients stay caught up.”

Success Stories

DeAngelis’ goal is to ensure that clients can successfully enter and stay within the workforce, regardless of their chosen occupation. Not only does each client enjoy their work at their respective jobs, but they also help to normalize disabled people in the workforce. And for DeAngelis, each disabled individual placed within a company or business is a fantastic reward for every party involved.

Photo provided by Easterseals Colorado.

“Success stories are the best part of the job,” he said. “That reward of seeing a client be successful, be happy, and obtain their goals, there is no better feeling. It makes me so excited and happy to go to work every day and help clients reach their goals, push toward their goals, and even discover what their goals might be.”

DeAngelis notes that one client is ready to transition to a full-time career. Through the help of Easterseals Colorado, and several years of preparing for this moment, the client, as well as his current company, agreed to a full-time position. But each story of success does not end with a full-time job. Rather, DeAngelis’ job is to help disabled individuals embrace their needs and recognize when they require assistance.

“One of our clients, for many years, had been working two days a week,” he said. “In the past couple months, I noticed he had a lot of extra strain and stress. I had a conversation with him and his team, and I said, ‘I know how much your job means to you. Walking around the store with you is like walking down a red carpet with all the high-fives from regular customers and coworkers.’ It’s a real point of pride and identity for this client.”

The solution was to take the client from two shifts to one. DeAngelis explains that his energy levels returned, he is still able to interact with his community, and remain employed. This story also demonstrates the importance of advocating for accommodations within the workspace. If the client did not recognize this need, they would have experienced burnout, and possibly had to leave their job.

Finding a job is already an immense challenge. And for disabled individuals, the numerous barriers that often accompany job searching, and employment overall, can be overwhelming. For DeAngelis and the team at Easterseals Colorado, these barriers can be dismantled to provide fulfilling employment opportunities.

“In this go, go, go world, where everything needs to be, or seems to be, needing a snap judgment and decision, [we really need to] remember that we’re all human, we’re all doing our best, and we all have something to give back,” he said. “Our clients want to give back.”

Visit the Easterseals Colorado website to learn more about their services. Thank you to Henry DeAngelis for providing an interview.

Photo of Keah by Grayley’s Moon.

By Keah Brown

My journey as a writer began when I was eight years old. I sat on a twin-sized bed in my room curled up with a green college-ruled notebook whose cover read, “Keep Out! Property of Keah Brown.” The contents ranged from poetry to songs and short stories — poorly written, I must admit, but necessary for my growth nevertheless. Inside this notebook were hopes and dreams I remain eager to fulfil and see come to fruition. I let every emotion, feeling, and thought I had onto the page. The notebook was half diary, half creativity, and when inspiration struck, there it was under my white antique dresser, the best hiding spot I could think of, waiting for me. My love for the written word came early because my love for books and reading began early. In fact, one of my fondest memories of my childhood was reading the romance novels my aunt took out from the library when she was done reading them. I fell into the worlds of Sidney Sheldon, Nora Roberts, James Patterson, and Jude Deveraux long before I understood the entirety of what I was reading. In their worlds, the adventures were my respite, the chance to focus on the worries, realities, and experiences of others while pretending my own did not exist.  

I was an anxious child, in secret of course, always worrying about which person I loved, I would lose. I began spending my nights pleading with the universe to keep them safe, happy, and alive. On top of the worry surrounding losing my loved ones, I began to worry about what I believed was my inherent role as a burden to my family and friends because of my cerebral palsy. Disabled people are taught by society at large that our needs, however wide-ranging they might be, are enough to warrant a resentment that can lead to mistreatment and sometimes, in most horrific cases, death. So I did my best to make myself small. At night, I begged God to make me “normal” and, despite the unyielding love from my family and friends, I began to hate myself and resent that my prayers for normalcy were going unanswered. I was an anxious child who became an anxious adult who glommed onto the idea that my body made me unlovable — and ran with it. My first published pieces as a writer basked in my resentment and discomfort for my body, waxing poetic about how hard life was as a disabled person. I started therapy not long after (thank God) and realized what a disservice I had done to and for myself and the community.  

Alongside therapy and saying four things that I like about myself, I began to love myself and my life changed. I started believing more was possible for me and listening when my loved ones told me that I was not a burden, and anyone who treated me as such was not worth my time or energy.

After a viral hashtag and three books, I find myself unable to create. As a person who learned to traffic in hope and who has always had a special connection with the written word, the fact that I am unable to get past the ideas stage is more than disheartening. There is nothing like seeing the thing that you have created in stores and knowing it will find a home with readers who need it. I miss that.  

Photo of Keah by Greyley’s Moon.

The truth is, I don’t know who I am without writing and I don’t want to. When someone reaches a level of visibility that three published books provide, despite the fact that they aren’t award-winning, I think there is a consensus that life is great, and my issues are few and far between. However, that couldn’t be further from the truth. I am well aware that living through an ongoing pandemic, climate change, and a world on fire — personally and culturally — has something to do with it, but now, when I look at a blank document, my anxiety spikes instead of the usual rush of adrenaline.  

At the tail end of last year, after I was done promoting the publication of The Secret Summer Promise, my third book, I spent my days in bed crying and unable to get up. In the off chance that I did find my way back to my laptop, I spent it letting tears line my keyboard in place of words. I was withering away. The once vibrant, eager, boisterous version of me was now the depressed, exhausted, lonely reality of me. After years of pretending to be fine and trying to push through, I knew then, after months of trying to make a middle-grade novel work, that I needed more help than monthly therapy sessions could provide. With shaking hands and a tear-riddled voice, I went to my primary care physician and told her I needed to be put on depression and anxiety meds. They were not the easy fix I was hoping for. At almost eleven months into the year, I’ve adjusted the brand name and milligram of my med a few times. I just now feel like I can function and have started dipping my toes into writing poetry again. I don’t believe that everything is better now, but I trust myself enough to be honest about what I need so that I can show up long enough to attempt to create another long piece of work. Writing books has been my dream since I was eight years old. My name has been on a book spine three times, and my hope is to write one million more books across genre and about messy, complicated, but lovable characters who are just trying to figure themselves out and where they belong in the world. In order to do that, though, I have to take care of myself and my wellbeing so that I can show up for the stories I have always been so eager to tell.  

Keah Brown is a writer, journalist, and disability rights advocate known for her impactful work on the intersection of disability, race, and self-love. As the creator of the viral hashtag #DisabledAndCute, Brown promotes body positivity and self-acceptance for disabled people. Her works include The Pretty One, The Secret Summer Promise, and Sam’s Super Seats.